Bioethics of Archival Human Temporal Bone Collections

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Project Summary In researching the history of the archival human temporal bone histology slide collection at Johns Hopkins procured in the early through mid 1900s, several questions arose regarding the history and ethics of the consenting process for obtaining postmortem temporal bone specimens during periods with less sophisticated practices than today's standards. Additionally, our collection includes an over-representation of certain groups of historically marginalized patients who may have been subject to disparate living conditions, structural inequities, and medical treatment. We will consider the historical, environmental, geographical, social, and economic factors that may have contributed to disparate treatment of non-white individuals, women, individuals with disabilities (in particular, hearing and balance disorders), economically disadvantaged individuals, immigrants, children, and the elderly in medical settings, and, consequently, may have rendered these individuals more likely to have been subject to death, postmortem autopsy, and temporal bone harvest. Prior to making images of these slides accessible to researchers outside our group, we will perform a thorough assessment of these ethical considerations and develop guidelines for the future use of archival human temporal bone histology specimens in research. Our specific aims are to 1) perform a systematic retrospective analysis of the history and ethics of consent for human temporal bone donation and procurement in the 1900s, and 2) develop a community advisory board to inform decisions regarding the future use of the Johns Hopkins temporal bone histology slide collection and future temporal bone harvest and data-sharing. To ensure that our work is informed by diverse perspectives, we will include researchers from historically marginalized groups (individuals who identify as women, non-white, immigrants, deaf/hard of hearing) in the bioethics research process, including both co-investigators and trainees. We plan to engage community representatives to ensure that human temporal bone research is performed in an ethical, inclusive, and culturally sensitive manner while also working toward the goal of generating otopathology data that is more representative of the diverse U.S. population than in the past. The proposed project is specific to bioethics research.